We tried it, and by using this approach I could put more of the strain on my joints rather than on my muscles. The staff were all positioned around me with pads in case I lost my balance, but I was able to sit on my own, unsupported, for the first time. This might seem like a small thing but to know that I was doing it by myself? I thought, This is unbelievable!
At that moment, Aimee walked into the gym. She got a massive surprise, seeing me sitting up, out of a wheelchair, with a big smile on my face. I realised it wasn’t just a big thing for me; it meant a lot to her too. She came over and gave me a big hug, almost knocking me down. Even though I was hunched over and couldn’t hold the position for long, still, I could do it. I’d overcome a major hurdle, and I’d learned a new skill, too. I had never thought of using my joints instead of my muscles to prop myself up – it was a useful new trick that I could use in a variety of ways. No matter how small the accomplishment was, things like this gave me the energy to keep pushing on.
My next goal was to get out of the powerchair and into a manual wheelchair permanently. I asked Jenny and, given that I had some balance and basic pushing skills, and that I always had help around from family and friends, she decided it would be okay to chuck me in the manual chair. The powerchair would stay in my room, in case I needed it or wanted to venture a bit further, but from then on I wanted to stay in the manual chair and learn on the job by pushing around in it. So it was a big week.
The manual wheelchair was the same old clunker with flat tyres, and it was really hard to get anywhere without a push. Looking at other people’s wheelchairs, I thought that there must be an easier ride to get around in. As I started to look more closely, I noticed that some of the paraplegics in the hospital were cruising around in different kits altogether – super light and manoeuvrable chairs. Being a boy who loves his toys, it wasn’t long before I started searching on the net with David, checking out the best wheelchairs.
When I asked Jenny, she reminded me that I still had some way to go.
‘You’re at the recovery stage right now. When you get to the rehab centre at Moorong, that’s when the staff will start prescribing the right wheelchair for you, for when you leave. It will be better than the one that you’re in, but it has to be right for your needs.’
I didn’t want to wait that long, but I soon realised that I knew nothing about wheelchairs. David and I were treating it like going into a car dealership and buying a stock car. ‘We’ll have that shiny black one, please,’ not knowing that it wasn’t suited to my needs.
So I kept going back to Jenny and asking, ‘Can we get this wheelchair? Like, just go and grab one?’ And she’d explain, becoming more and more frustrated each time, ‘It’s not that easy. We have to measure you up and check for pressure areas to make sure you don’t get skin problems. Every chair is customised.’
I was a bit bummed that we couldn’t go ahead and get something better. I would just have to make do with this chair. I understood later that the hospital had to rely on borrowed or old hand-me-down wheelchairs.
I cruised around in that wheelchair for a while, and I could feel myself getting ever so slightly stronger by pushing all of the time instead of only during physio. And I started to feel a bit better. My blood pressure and other vital signs improved because I was upright all the time. I could feel my body changing.
Meanwhile, in OT, it was obvious that Dave had worked out what I was about. Whenever I tried to be lazy, he wouldn’t have any of it. When we were learning new skills and I wanted a break, or when I asked if I could use an extra tool to help me, he wouldn’t allow it. He knew I was a resourceful person, and my eyes were forever scanning the room, looking for something to assist me, but he wanted me to learn everything from the ground up, without cheating.
When we first worked on the tenodesis grip to pick up objects, I’d already figured out that I had more of a pinch grip between my fingers than I had between my fingers and thumb. But if I tried to use my fingers to pick things up during my exercises, David would crush me. He would make me work more on my thumb grip, using my hands like crab claws, which he saw as being more functional in the long term, but I knew in my head that it wasn’t. I was cheating in a way, but I knew it was more efficient. Then one day when staff came along and filmed me for a functionality video that was intended as an education tool for quads coming through the system, each time they asked me to pick up a coin or something thin, I’d pick it up with my inside fingers, trying to be smart, as if saying, ‘Hey, there is another way.’ But it was almost like getting the old-school caning from my teacher who said, ‘That isn’t what this is about. We’re supposed to be teaching people how to manipulate their hands in order to pick up things.’ I was thinking, Well, I am teaching them. I’m teaching them there are other ways. Forever the smart-arse.
It was the same with wheelchair skills. I would always look for an easier route rather than doing the hard part, pushing up a hill or getting over an obstacle. But Dave would keep me on the right path. I think he could see that I had the potential to improve a lot, that I was skilful.
It reminded me of my soccer days and my reputation for cutting corners all year round when it came to any training that didn’t involve the ball. One year I won Player of the Year. I was in the first team at the time, and there were a lot of youth players at the event. When I went up to get the trophy, I held it above my head and said, ‘This is what you get if you cut corners, guys!’
In reality, when I was looking for more efficient ways to do something, I wasn’t just being lazy. I was starting a process that lots of other people with SCI will recognise. It’s an important skill to be able to adapt and design your own solutions to problems. There will be times when the ‘right’ way isn’t possible, or you don’t have the normal tools at your disposal, and that’s when you need to be able to think outside of the box.
The entire time I had been on the ward, I was pretty sure the other bed in my room was empty, but the curtains were mostly closed, so it was hard to tell. One evening a new guy was put in the bed next to mine. I must have been asleep, because I was woken up by these really bad coughing and gurgling sounds.
I thought, Shit, that doesn’t sound good. That sounds like me when I was getting my throat drained by Yoda.
The guy’s mum was there as well, and my family started speaking to her in the waiting room. We were neighbours now, so when she came into the room I gave her the full introduction. Even though I’d been at North Shore only a short time, I almost felt like a veteran in the ward, like I knew everything.
The new guy’s name was Brendan, and he was from Coffs Harbour. He would turn out to be one of my closest friends during my time in hospital. Depending on when you’re admitted into hospital, you tend to go through the whole rehab process with the same crew, which is a large block of time to spend together. I was lucky that when I arrived at North Shore there was a really good bunch of people going through the system, which made life a bit easier, or certainly more fun.
I went through rehab with a bunch of young guys (and Max, who was young at heart). There weren’t many who were sitting in the corner having a cry. We were all determined to make the most of our situation.
I told Brendan’s mum about my accident and my journey to get this far, and she explained what had happened to her son. He was in his early twenties, and he’d had a motorbike accident way up in the Northern Territory. He had stacked his bike and slid across the ground, getting wedged in a storm drain.
As she related the story, I had these visions of sliding into a drain myself, and I couldn’t help but wince. The impact had broken his back, and he’d been in hospital in the Northern Territory for a couple of weeks before they were able to fly him down to Royal North Shore.
It wasn’t until the next morning that I actually met Brendan. Shortly after I woke, the nurses pulled away the curtains and I looked over. We were both in bed and he gave me a thumbs-up. I called out, ‘Hey, mate. How ya going? I’m Daz.’ Brendan told
me his name, and as we started chatting and exchanging stories, he came across as a no-bullshit sort of guy, like me. I noticed he had a temporary tracheostomy in his neck, which explained the gurgling I’d heard. It was the first thing he pointed out, and he said that it was annoying him. I thought back to the other alternative, the long plastic tube and drill bit they’d inserted into my lungs in Singapore, and I wondered which was worse.
It was good to have someone else in the room with me, who I could talk to when there was no-one around, and it was even better that it was someone who I felt a connection with right from the start.
23
Hopes and expectations
I’m not sure whether I box my emotions away too easily or if I’m some sort of psychopath but, as we learned more about my injury, I think I was a lot more accepting of things than my family were. I wanted to hear the practicalities of it all. I wanted the nuts and bolts, the blunt truth of everything, so I could deal with it head on. At the same time, I was hearing these unintended reminders of just how bad things were, especially from Mum.
She would say, ‘Daz, I can’t believe you did that today. That’s amazing!’ I would respond badly. ‘Are you serious? I picked up a marble, Mum. That is fucking ridiculous.’
Mum was the one who took the brunt of my frustrations, along with Aimee, because I just wanted to get on with my life and do things. I was painfully aware that the skills I was learning were so simple – my eighteen-month-old daughter was performing them better than me. She was learning all these basic life skills and fine motor functions, while I was having to relearn them.
Even though I was satisfied achieving these tiny goals, I hated people telling me that what I’d accomplished was unbelievable, because it wasn’t. That was how I saw it. I guess it was amazing progress from the perspective that I was an able person suddenly disabled, but in my head I thought, This is nothing.
I was trying to be positive for everyone, but I was also trying to be realistic. Mum was only giving me a pat on the back, as any mother would, but I snapped too easily, and it upset her. There was a difference in the way we looked at my situation, too. I felt like I got confirmation from the doctors in Singapore and then absolute confirmation from the doctor in Australia. My attitude was, Okay, put a line through my old life. This is it. Now I go from here, whereas Aimee was fighting against it more. She would say, ‘No, we’re going to beat this.’
This is a common mindset – the stuff of TV dramas – and it’s something that annoyed me going forward, the idea that my body would or wouldn’t work again depending on nothing but the strength of my willpower.
Aimee was looking around for alternative treatments and medicines. She went to see a naturopath, and he gave me twenty frigging pills a day to take. I knew they wouldn’t do anything, but I took them to appease her. She also looked into things like acupuncture. She’d sit on the end of the bed and close her eyes, willing my toes to start wiggling or something in my condition to shift. Whereas I was the one saying, ‘It’s a waste of time, man. I feel nothing.’
Each night, after everyone had left, I would lie in bed, close my eyes, and imagine going for a walk. I’d pretend to go through the whole process of physically trying to move, hoping my mind could cause a flicker or something. I don’t know where that idea came from, whether it was a method someone had recommended to me, but I would try to visualise walking. Even though I couldn’t perform an action that most people do instinctively, I could still think through that action. I would focus on moving my quad muscles and my feet in a walking motion. I was amazed at how quickly this visualisation exhausted me. I actually felt it through my whole body, like all the energy had been stripped from it.
I thought if I could just pretend to go for that walk every night, something might come of it, because Aimee and I used to go for a lot of walks together. That was my level of hope, even though I knew it wouldn’t work. I did feel at times like my legs were burning, but it was a phantom feeling. Aimee, meanwhile, would say things like, ‘You need to have willpower, and that’ll fix everything.’ All she wanted was to see one little toe wiggle. ‘That’s all we need,’ she would say. ‘Then we can build up to the rest.’
She spent time searching the internet and talking to other people, but there’s not a lot of information out there. I just focussed on getting where I needed to be. That was the only thing I could control.
Back in Singapore, even though I had all the crap with my lungs, there was a lot of downtime, lying around and doing a bit of exercising when the physio showed up. I was sheltered from the real world over there, but now that I was in Australia I had this whole routine. My reality slapped me in the face each time I tried to do something new – writing, picking stuff up – and all of it fed into my understanding of what my body couldn’t do. Everyday activities fuelled the frustration, but I had to keep pushing through. During the day I had people with me, so I put on a front, even though I snapped from time to time. But at night? That’s when I chucked my head under the sheet and had a cry. I did that most nights, initially. I’d let my emotions build up during the day, then when everyone had gone and the curtains were shut, I would be sobbing on my own, truly understanding where my life was at that moment.
I kept those thoughts to myself. I spoke to Aimee about it, but I didn’t want anyone to think that I was giving up. I was trying to show as little weakness as possible, I guess, trying to tough it out and get through. From early on I never wanted to be a burden to others. I wanted to learn to do everything on my own so that other people wouldn’t have to help me around.
I didn’t want those close to me to feel like they had to constantly watch over me, either. I figured that I could deal with it as long as I had that space on my own, which I found at night, when I could open that box of emotions and let them all out. Then I knew I’d be ready for the next day, ready to start again.
In some ways, it was a lot harder for Aimee to see the pitfalls of hoping for a miracle that would never arrive, because she wasn’t the one actually going through the injury and rehab, whereas I had the constant reminder of how things were, of how difficult everything had become.
I quickly learned that it was easier to have these conversations with someone else who also had a spinal cord injury. There are occasions when I think it’s harder for those closest to you because they’re not living through it every minute of every day. Just about every other patient I met going through rehab had, at some point or another, snapped at a family member. In a way, those close to us are lost. They can’t really understand what it’s like, and all they’ve got is their hope.
I’ve always said that it’s the hope that kills you, and now I really understood what that meant. This might sound negative, but I think hope is the most dangerous word in the bloody dictionary. My family was constantly battling between their hopes for the future and the reality of my situation. The goal that I was battling for, equally unachievable, was simply to be like a paraplegic.
How you deal with SCI comes down to a personal balance that everyone has to find. Some people are more pragmatic. Some people hold onto hope. It comes down to how your mind reconciles those two things.
24
Cookie
The weekends became much more bearable as the roster kicked in. We set aside a day for friends to visit who couldn’t get up to see us through the week, and we would all hang out. That was when I began to notice who was coming and who wasn’t. Some friends I expected to come and see me were having difficulty coming to terms with my situation, and they didn’t feel able to visit.
But then the ones I didn’t expect to visit, would come. I was starting to learn how people reacted to and dealt with another person’s tragedy differently. Some saw me in the wheelchair for the first time, and they’d give me a massive hug. Others would freeze up, startled and take a step back, not knowing what to do. I would always say to them, ‘Look, I’m still me. I just can’t move, basically.’
It was a real eye-opener on hum
an behaviour and how much baggage people associate with a wheelchair. I was constantly surprised. Someone would come and I’d think, This guy’s not going to worry about things, and they would be the person who had a problem with it. I understood, but I took note of it early on. There were visitors who would gravitate towards Aimee more than me. I thought that was great anyway, because she needed just as much support. So even though I was aware of it, it didn’t really affect me. After a friend went, I would think, Oh, okay. I’ll put him in that column for later, to remember that he might have an issue with it.
Sparkes would come up one weekend, and then my mate Johnny might come down from Queensland the following weekend. It was good to have mates – not just family – come in for support, to break up the monotony of the hospital.
One of the visitors who dropped by was a lady friend from the surf industry. She brought in a hamper of food. But then she said on her way out, ‘Oh, I’ve brought some special cookies up for you, too, Daz.’
She always used to make ‘special cookies’ for me and a friend when I worked at Billabong, and I’d chuck them straight in the freezer. But somehow in hospital I didn’t connect the dots. One Saturday night I was playing a board game with Aimee and Sparkes in the waiting room. We were sitting around the dining table, and I felt like something sweet.
Then I remembered: ‘Oh, we’ve got those cookies.’ Aimee and I both had one, and then we decided to watch a movie once I was back in bed.
Sparkes: Honestly, it was the funniest night. I was sitting back trying to watch the movie, but it was impossible because Daz and Aimee were laughing so much.
Owen and Eleanor Make Things Up Page 17